Resources
Dr Jutlla has worked on a number of projects to create resources to help raise awareness about dementia in south Asian communities.
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Punjabi
Resources
Understanding South
Asian Carers
At home
support
Further
Information
South Asian Resources
The ADAPT Study has developed an online toolkit of enhanced interventions to support south Asians diagnosed with dementia.
Here, you can find information about dementia in various south Asian languages, understand what’s involved in dementia diagnosis and assessment and what interventions are available for south Asians diagnosed with dementia and their families.
Available Resources:
Punjabi Resources
Commissioned by Alzheimer’s Society following her report on the post-diagnostic dementia support experiences of the south Asian community in England, Dr Jutlla co-produced resources about dementia with members of the Punjabi community including, clinicians, people living with dementia and caring for a person with dementia.
Learn about dementia in Punjabi
This is a 10-minute explainer video spoken in Punjabi (with English subtitles) on what dementia is, causes, symptoms and diagnosis. The video features Harjinder Kaur, who is a retired Community Psychiatric Nurse and advocate for older people in the South Asian community living with, and caring for a person with, dementia
There are also leaflets available for those who are able to read Punjabi:
Worried about your memory in Punjabi
5 things to know about dementia in Punjabi
Changing perceptions of dementia in Punjabi communities
This short film won 3rd place for the Anti-stigma Award of Alzheimer’s Europe in November 2023. It tells the inspiring story of Bhagwant who explains how her diagnosis of Alzheimer’s disease helped her explain what dementia is to other members of the Punjabi community. Bhagwant talks about the lack of dementia awareness in her community and how it is often seen as somebody ‘going mad.’ Use this short film to help change perceptions of dementia in the Punjabi community.
This information and further written information about dementia in Punjabi can be found at:
Understanding south Asian carers
Changing perceptions of south Asian communities for healthcare professionals.
Warning: viewers may find some scenes upsetting.
The ADAPT study is funded by the National Institute for Health and Care Research under its Research for Patient Benefit Programme (grant reference number NIHR200736). The study involved a collaboration between universities and voluntary and community sector organisations including: University of the West England, University of Bradford, University of Wolverhampton, University of Bath, Race Equality Foundation and the Dementia Alliance for Culture and Ethnicity.
Although a person can live well with dementia, there is little support available for those from south Asian communities. It is often assumed by services that Asian families ‘look after their own’ and therefore require little support. The ADAPT study highlighted the difficulties for those caring for a loved one with dementia with little to no support from their family, community or services.
Based on true events, Kiran tells the story of a young south Asian woman who is caring for her mother living with dementia. The film demonstrates the brutal reality for many carers experiencing a lack of culturally inclusive care.
This highly emotional film won the best Post Craft Production Award of the Midlands Royal Television Society Awards in November 2023. This powerful short film can be used as an educational resource to raise awareness of the current circumstances for many south Asian carers and the urgent need for culturally inclusive dementia care.
The film can also be found on the homepage of the ADAPT Toolkit, representing the heart of this study.
What can I do to support someone to live with dementia at home?
Based on her work to date, Dr Jutlla has compiled a list of ten top-tips for carers to help them support both themselves, and their loved one, to live well with dementia:
one
Ensure routine
Make sure that their belongings are always in the same place and that there is an order to the day.
two
Have labels and signage
Depending on our personality, we can quite often get embarrassed if we can’t remember something simple like, where the sugar is or where the milk is kept. Little cues around the house can help someone find their way without feeling frustrated.
three
Ensure safety
Have you got all the services you’re entitled to? Enquire about telecare which is a 24/7 monitoring system to help keep people safe from taps being left running or the gas being left on.
four
Get help with personal care
Once again, ensure you have access to all services. Some home help can make the world of difference to your day. Personal care can often be the most challenging, and there are many professionals are trained to deal with this.
five
Let go of your rules
A person with dementia will challenge anybody who struggles to ‘go with the flow.’ Sometimes the most beautiful thing you can do is to join them in their reality which takes me to my next tip…
six
Don’t try to force them into your reality:
If they are convinced that it’s Monday, and it’s Wednesday, you don’t need to argue with them.
seven
Be careful what you remind them of
Because a person with dementia will go ‘back in time’, there may be times when they think that a loved one who has passed, is still alive – if you tell them that person has died, it will be like the first time they heard it. Instead…
eight
Be
Creative
Find a creative way to bring them peace and take their mind of it: this can include playing music, artwork, games, dance, etc. It’s a great way to connect with your loved one too.
nine
Get to know their history
Did they have a hobby they once enjoyed? What is their favourite music? Celebrate their life with them. A person with dementia will always love talking about the past because those are the memories that are the strongest and sometimes, newest to them. Make an ‘About Me’ book that can go with them if they are ever taken into hospital or respite care. This type of information is like gold dust for healthcare professionals who need to meet their needs fast.
ten
Don’t be hard on yourself
Not every day will be a good day and if your loved one is feeling down and upset, they’re allowed to be – it’s not your fault! You must take care of your own mental health wellbeing and ensure that you have a hobby that takes you away from it all.
Where can I go for further information?
Admiral Nurses are specialist dementia nurses. Continually supported and developed by Dementia UK, they provide life-changing support for families affected by all forms of dementia – including Alzheimer’s disease. Find an Admiral Nurse:
To read about dementia in other languages including: Arabic, Bengali, Traditional Chinese, Gujarati, Hindi, Polish, Sylheti, Urdu, Welsh and British Sign Language visit:
Always speak to your GP if you have any concerns.